Forum


donatenew

Welcome, Guest
Username: Password: Remember me

TOPIC: Tongue sticks out, breathing troubles

Tongue sticks out, breathing troubles 3 years 2 months ago #3396

  • DnAs
  • DnAs's Avatar
  • OFFLINE
  • Fresh Boarder
  • Posts: 2
  • Karma: 0
My wife at age 49 began experiencing sudden tongue swelling, her tongue would push forward to a painful degree, speaking was nigh impossible and sometimes her breathing became difficult.
By luck a home-visiting doctor suggested diazepam to use before her tongue became too swollen ( bunched up is how the doctor described it and very anxiety- provoking !). The diazepam worked a treat. The doctor, a GP did not know exactly what the cause was but we were grateful he had found something which worked.
We found that some ice applied to her tongue at the onset of tongue trouble would sometimes stop the tongue protruding.
The problem then was to find someone to diagnose the cause of my wife's condition.
Our GP was unsympathetic and not sure what to do. Even though it did not make much sense to us my wife was referred to an allergist, in case the swelling was due to some allergic reaction. Many tests later there was no allergy cause found. The allergist could no believe that tongue swelling/protrusion would settle with diazepam - he said my wife was the only person in the world with this condition, whatever it was ! This w as not very helpful and by now with episodes of tongue protrusion my wife required an injectable form of medication when she was not able to take a tablet of diazepam. Worse still, with the associated breathing difficulties, ambulance officers were told by their medical advisors NOT to give injectable medication in her breathing emergency in case the injection adversely affected her breathing unless we had a letter from a specialist dictating the emergency treatment !
By looking at sites, description of medical illnesses ( thank heavens for the internet) we found that my wife is not alone with her condition of lingual dystonia.
However trying to find a neurologist who would listen, examine thoroughly and take note of the photograph of my wife during an attack was a real challenge.
We are still in that process but offer some things that have helped us so far or in hindsight would have helped earlier, and of course we would welcome any help.
Firstly with mobile phones these days taking a video during an attack seems a good way of demonstrating to a health professional what is happening to the person and the effect of any treatment ( in our case, ice or diazepam tablet),a photo is second best. One or both of these might help the GP to find the correct type of specialist first time and make him/ her realise the extent of the trouble. I note that specialist neurologists may admit people to hospital particularly to observe and video a patient's s dystonia episode.
A letter from the GP EXPLAINING what happens and (if confident enough, what works) is vital as once tongue protrusion happens it is difficult for anyone to understand the person , this also helps ambulance and casualty staff we have found.
I have read that other forms of dystonia might also affect communication.
Once a diagnosis is reached by the specialist ( sooner the better) a letter from the specialist delineating emergency treatment for ambulance and casualty is,in our minds, a must.
I do not wish people to be frightened by the things I have described about our experience, but to do whatever is possible to prevent troubles, find advocates and support to ensure safety of the sufferer and find the best help that medicine and the health professions can offer
The administrator has disabled public write access.

Tongue sticks out, breathing troubles 1 year 4 months ago #4034

  • Supergran
  • Supergran's Avatar
  • OFFLINE
  • Platinum Boarder
  • Posts: 261
  • Thank you received: 15
  • Karma: 4
I have generalised dystonia and often have to go to hospital in an ambulance with breathing problems and as such I share your fears. I want to share with you some information which took around 3 months to complete in my area but has been a god send. There is a system in my area at the GP surgery called a key information system...shorten to KIS by the Doctors.

This is basically a care plan on the computor which is regularly updated by the medical physicians and the hospital clinics and a&e departments have access to this information. In my case I did some research and found out that all medical people have access to this which specifically gives emergency care details and nothing more! But the ambulance service did not and they are your absolute front line staff which seemed rediculous to me. So after a number of unhelpful incidents, the outcome for me being a wheelchair!, there was some work done with the senior management of the ambulance staff, who were fabulous, the computor systems available to them started to include my emergency care plan. For me it was a case that the ambulance ride at best was an expensive taxi ride to hospital but at worse could have been fatal. There is little recognition at times that as soon as you make contact for medical assistance you literally hand over all power of your life to a third party who become in charge and can actually contact the Police if you dont comply and you end up with a mental health assessment which is a game changer.

The other thing I want to share with you is that my throat swells up and I have no allergies but was prescribed anti histamine tablets whichI take quickly as soon as I recognise a problem is looming and they have worked well for me.

Good Luck x
The administrator has disabled public write access.
Time to create page: 0.096 seconds